April 15, 2013

What a tragic day today in Boston as two bombs exploded at the Boston Marathon in an act of terror. I cant even imagine all the horror at that scene. Prayers to all of those affected by this tragedy.

Last week was a busy week full of lots of running from appointment to appointment. Maks had his first eye exam since being home last Monday. It was pretty exhausting for him, but we were encouraged to find out he was still showing growth into his peripheral vision.

We have loved having Maks home, and I am so grateful to be able to snuggle with him and love on him whenever I want. He is awake more, and I can't imagine him being so awake and alone in the cold NICU! I also think it is good that he has the consistency of Logan and me. Here are a few pics from the week:








The rest of Monday and into Tuesday was pretty rough for Maks. He got so worn out from his eye exam and doctor's appointment in Monday, and he just didn't have the energy to eat. He lost weight when home health was here to weigh him, and we ended up having to go to the NICU to get the feeding tube back in. That was a setback that was kind of upsetting to me, but I knew it needed to be done, and it has definitely helped him gain strength and gain weight.

Friday was my due date. I remember the day Maks was born, thinking that April 12th seemed so far away. I can't believe it has now come and gone. Maks weighed 6 lbs that day, which is probably pretty close to what he would have weighed if he had been born that day. He really has come so far.

Maks was doing well eating the past couple of days. We we have only had to use the feeding tube a couple of times a day if he got too tired when eating. He has also been doing well with the oxygen, and he is usually only on 1/32 of a liter. Unfortunately, Maks had another eye exam today that has really done a number on all of the progress he made last week. He hasn't eaten well since the exam, and his oxygen sats are all over the place. He is on 1/8 of a liter right now and is still fluctuating.

The eye exam also wasn't that encouraging today. The growth into the periphery has significantly slowed, and the ridges are more pronounced and beginning to pull. Maks is scheduled for laser treatment on Thursday to prevent any damage or blindness. The ridges haven't quite made it into zone 3, so he will lose quite a bit of his peripheral vision.

It turns out this surgery is a pretty big deal for these little ones. Maks will have to be hospitalized and intubated, which I'm sure will only add to the setbacks we have had this week. I'm not sure how long he will be in the hospital. We will talk to the hospital tomorrow and hopefully get some answers

We have been pleased with Dr. Romriell so far, but because of the nature of the procedure and what is at risk, we have decided to contact the Moran Eye Institute in Salt Lake for a second opinion; however, if we can't get in to see them this week, we will probably just go with the procedure here because we are afraid of waiting too long due to the potential for retinal detachment.

To complicate things a little, I started back at work today, and Milyn spiked a fever again yesterday due to her tonsils. To say we are going a little crazy at our house would be an understatement! We continue to pray daily for more strength and miracles!


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3 months old!

Maks was officially 3 months old on Friday! He weighs 5 lbs 11.5 oz and is 17 inches long. He is our little micro baby. Here is his 3 month comparison picture. He is getting so big!


He is doing pretty well at home. I am a little frustrated that the doctor sent him home this soon, however. I think he really could have benefitted from a couple more weeks in the NICU. The biggest reason I feel he should still be in the NICU is his eating. He isn't eating and gaining weight as much as he should be. He just gets so tired. In order to get in the recommended 150ml/kg/day, we were having to feed him for 45 minutes to an hour, which is useless because he was just using up all of the calories he was taking in. I decided to take a new approach and feed him for 20-30 minutes and see how much he can get in and see if it will help him gain more weight. He is, surprisingly, eating a little more because he has more energy.

My cousin Haley Basil from Aspen Home Health came on Monday. They will come twice a week for several weeks to weigh Maks. We also had a couple of appointments with the pediatrician this week. Dr. Anderson is also concerned about Maksim's weight gain, and depending on how much he weighs tomorrow at his appointment, they may decide to put a feeding tube back in. As difficult as that may be for a while, if it will help Maks grow and get stronger sooner, we will make it work at home.

As far as his oxygen goes, he is currently on 1/8 to 1/16 of a liter regularly. He had a good day yesterday, though, and he was down to 1/32 for a couple of hours.

Maks has another eye exam tomorrow. That should be an ordeal for me trying to get him there by myself. These were definitely more easily done in the NICU! We are praying it goes well.

Life with two kids is definitely different, and because of Maksim's extra needs, life can be very challenging and discouraging sometimes. However, my father recently reminded me that up until the past couple of months, my life has been pretty uneventful with no major trials or struggles. Maks' birth has been a learning experience and eye-opener for me. I have much to be grateful for, and I am trying to remind myself of that. I am so grateful for a living, beautiful, miniature three-month old, and vibrant two year old, and as much as they sometimes stress me out, I can't imagine my life without them. Hopefully I can somehow figure out how to survive working and being a mom of two kids, so I can enjoy these little bundles, because as difficult as life is right now, the time will pass, and they will grow up.

Here are a few pictures of the last week.











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